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Congenital myotonic dystrophy (CDM)

Congenital myotonic dystrophy (CDM) is a form of Myotonic dystrophy Type 1 (DM1) in which symptoms are present at birth. Congenital means “present from birth.”

About congenital myotonic dystrophy (CDM)

Congenital myotonic dystrophy (CDM) presents with symptoms very early in life and often requires immediate medical attention. Babies with CDM often have low muscle tone and may have difficulty breathing or feeding on their own. Because symptoms begin so early, infants with CDM often need specialized medical care right away. CDM is the most severe form of DM1 and is almost always inherited from a mother who has DM1.

As children grow, symptoms and needs can change. Some challenges may improve over time, while others may require ongoing medical, educational, and supportive care.

Videos about CDM from the Digital Academy

Congenital & childhood onset

Ask-the-Expert: Pediatric endocrinology & myotonic dystrophy

Published: October 10, 2025

This webinar will feature Nadia Merchant, MD, a Pediatric Endocrinologist and Geneticist at Children’s Health in Dallas, Texas.

Empowering Adult Children: Managing Care, Service Delivery, and Living with CDM ...

Published: August 28, 2025

This session focuses on supporting an adult child with Congenital Myotonic Dystrophy (CDM), offering strategies for promoting independe...
Congenital & childhood onset

Adulthood Ahead: Essential Planning for Parents of Children with CDM - 2025 MDF ...

Published: August 28, 2025

This session provides essential guidance for parents of children with Congenital DM as they prepare for their child’s transition to adu...

CDM resources